David, As a spouse, this is only the second time I've posted on this site, but I read it a lot and am certainly familiar with you and everyone else who posted a response to your question. I feel like I know you all. I think your question is right on the mark, at least in my experience. Survival is something that I worry about every single day, particularly with a gleason 9. I want to grow old with my husband, plan a future, retire, travel, enjoy grandchildren, and now everything is in turmoil because we simply just don't know where this thing is going, and the statistics aren't so great for us. I feel sometimes like we're playing with dynamite, so I don't look at statistics any more. They're all over the board anyway and drive me crazy. As members of this site advised me before, the worrying does ease with time, but never goes away. My husband's internist told him he didn't think this was a death sentence. I'm holding onto that, and any other positives. Since the statistics aren't great, I ignore them. My husband and I were talking today, however, and even in spite of everything that has happened since last summer, we both agree -- we've had a pretty good year, considering what might have been. Hang in there -- you certainly have a right to be down after living for 32 days with a catheter. I hope your appointment on Monday goes well and you and every member has a very happy, healthy and safe New Year.
Diagnosed Gleason 8, July 2008. Tumor left side only.
open RRP, Johns Hopkins, September 2008. One nerve spared on right side. Home the next day. Back to work in 3 weeks. Exercising after 5 weeks.
Pathology: Nodes, vesicles clear. Upgraded to Gleason 9. Negative margins. Some extraprostatic extension. No further treatment for now.
First PSA .1 -- after 5 weeks. Dr. says this is undetectable based on the assay used, but I wish it was zero or "less than." Whatever. We will look at the trends, just like everyone else. Next PSA will be early March.
Dry from the day cathether was removed on day 9. No problems at all except if he drinks coffee. ED is an issue, but we are starting to see some slow and rather inconsistent progress with meds. Surgeon says based on progress to date, he is "confident" that after a year, he will have full function restored. I really love that word "confident" --- it's the first time he's used it in connection with our case, that's for sure. Amazing how one hangs onto a hopeful word or two.